I have finally found the courage to write my first blog post. I think that these will get easier, but I’ve struggled for several days trying to decide what to say. I am still figuring out how to approach this situation and deciding how much detail I feel comfortable sharing. I was surprised when the news about Tilly got out. I made a post on my personal Facebook page (not fan page) and someone posted it on a Big Brother website. I wasn’t upset because I knew I would share the news eventually; it just caught me off guard. So forgive me for taking so long to find the words to say here……it is a bit of a struggle.

My little girl was 7 weeks and 1 day old when we rushed her to the emergency room. We had been making regular visits to the pediatrician for weeks trying to figure out why she seemed so unwell. I researched like a crazy person for answers, but everything that I found pointed to “normal baby behavior” and I was constantly reassured that she would grow out of this “fussy phase.” I held onto those words while we waited for answers. We found out at 4am on Labor Day that she had cancer. It was shocking to say the least. Cancer hadn’t been a consideration, not even a worse-case scenario. I don’t like to think/talk about a single minute of those 24 hours. I know that I had never truly been heartbroken in my life until that moment. I had never really felt helpless. I had never really known what it was like to cry. That was the first time that I learned what those things really felt like.

Tilly started chemotherapy within 26 hours of being diagnosed. She had biopsy surgery the following day and recovered from both like a champion! After 2 1/2 weeks we got to spend a few days at home before we went back for her 2nd round of chemo. She is still on the mend from that now but is doing well. I am so proud of her. She inspires me with her strength and keeps me going. Many times I would have probably crumbled if she wasn’t smiling.

Today we are in a place of hope and optimism. All news has been good news since the diagnosis. I find a thousand blessings in the situation each day. I am grateful for her age and inability to remember the pain. I am grateful for her team of doctors and their knowledge in treating her. I am grateful for a small platform to bring awareness to this disease and the thousands of other children (and parents) who suffer.

Mostly, I feel blessed for the outpouring of support from so many people. I am grateful to have so many amazing friends who have made a most terrible situation a little better. They continue to surprise me by doing little (and sometimes big) things for Tilly, Ryan, and I. In fact, this site wasn’t my idea at all, but a gift from a couple of the best. I am touched by the support of all of you who are reading this. I mean it when I say that I am appreciative of each prayer that goes up in her name. I am grateful for your kind messages on twitter. I can’t tell you how dramatically my spirits have been lifted by so many notes of encouragement and hope that I have received.

I never had any plans to be this person…..a mom who blogs about her daughter’s journey fighting cancer. But here I am. Sometimes I will be a little shaky because I really don’t know what I am doing, but I will do the best job that I can. Thank you for taking the time to listen and care. I will update again soon.

It has been WAY too long since I updated this blog. I had every intention of doing it sooner but things always seemed to get in the way. I will take this moment while Tilly is sleeping to bring you up to speed!

Tilly had her 4th chemo treatment the week of Nov 4th. It was a really rough one and she was pretty sick for a couple of weeks. The nausea always seems to last longer for her than for the average patient. She ended up getting a blood transfusion to help her counts recover and felt better from that point on. Since then she has just been getting a little better every day with her energy and demeanor. During normal schedule we would be starting chemo again on Monday, so this is her best time.

We have been working towards surgery since her diagnosis. Because of the location of her tumor, it was not resectable. The hope was that the chemo would shrink the tumor enough that it was easier to remove; they thought this may be possible in 4 rounds. And now, here we are! She had scans last week that were sent to her surgeon at St. Jude’s Children’s Research Hospital. Ultimately it will be their decision based on her scans to declare her ready for surgery or if we need more chemo first. It’s hard not to be stressed out while we wait for an answer. We are hoping and praying daily that she is ready for the surgery and we will be on our way to Memphis sooner than later. I am so excited and grateful to be taking her to such an amazing place. I know she will be in the absolute best hands possible.

In non-cancer news, Tilly helped put up her first Christmas tree! I thought she would be all kinds of excited, but really she didn’t care at all. She has looked at the tree maybe 3 times. Better luck next year! She is 4 months old now and so big! I really couldn’t be any more proud of her. I had my first “night out” since she was born this week and went to the Justin Timberlake concert. I thought I was doing really good until about halfway through the concert when I went to the concession stand and proceeded to show her picture to everyone who would look and announce that it was my first time away from her. Embarrassing.

We have family pictures this week and I can’t wait to see them! I will share a few when we get them back. For now, enjoy her “monthly” picture. I have done this every month (once while we were in the hospital) and it’s so fun to look back and see how much she has grown.